Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Society & Culture
Kids & Family
Parenting
101
SCN8A Rare Mom - The Inch Stone Project and DEE...
39 min
102
Developing Personalized Therapeutics for Ultra ...
37 min
103
How Being a Mom to Twins with a Rare and Undiag...
43 min
104
Effisode - Are We The Actors
5 min
105
A Rare Collection - Keep Digging
18 min
106
The Tréxō Robot and the Many Benefits of this T...
36 min
107
The Outlet - How Chris Anselmo Used Writing to ...
39 min
108
A Rare Collection - Wishing Well
15 min
109
Effisode - The Ultimate Rare Disease Resource G...
4 min
110
Doctor and Rare Disease Dad Is On A Mission to ...
47 min
111
Helping Undiagnosed Patients Who Experience Sym...
42 min
112
Effisode - There's No Crying In Baseball
4 min
113
Patients and Caregivers Being Compensated to Te...
20 min
114
Take Part Founders and PYROXD-1 Parents - Matt ...
47 min
115
Effisode - Wheelchairs and Walls
4 min
116
A Rare Collection - Exhausted and Energized
12 min
117
Real Rare Mama Shop Talk - Deciding What We Sha...
38 min
118
Love, Hope and Cure SYNGAP
107 min
119
Every Patient Matters - Discovering, Developing...
39 min
120
Effisode - Rare Disease Day Events
4 min
121
A Rare Collection - To the Moon and Back
22 min
122
Honoring a Husbands Legacy by Finishing His Wor...
26 min
123
Effisode - Barbara Is Real
4 min
124
From Cancer Biologist to Rare Disease Mom - Dig...
28 min
125
Never Give Up - Two Decades of Struggles From D...
53 min